Dear Mr. Kimmel,
First, I’d like to wish Billy a continued smooth recovery and I’ll keep him in my prayers for his next leg of his CHD journey.
I’m the author of the enclosed book about a girl with a CHD and pacemaker. Other heart children have enjoyed having a character they can relate to, so I thought Billy might as well someday. My daughter, Riley, was born with a defect to her electrical system of her heart and has had a pacemaker since she was a baby and will need one for the rest of her life.
I wanted to personally thank you on behalf of heart parents everywhere for your emotional telling of Billy’s story. I wish you could’ve seen the emotional reaction you stirred among the heart community – from those who walked in your shoes 20 years ago to those who were sitting by their heart child’s bed that next morning.
We all cried. We cried as your words brought back the dark memories of our early days on our own journey. We cried as you thanked doctors and nurses, because we too have a list of doctors and nurses we are eternally grateful for. We cried as we each remembered the words, “There’s something wrong with your baby’s heart.”
But more than that, what I saw from all my heart friends from around the world was gratitude to you for elevating our cause onto literally another stage we couldn’t access. Many of us are strong advocates for CHD – whether it’s research funding, patient and family care, and CHD advocacy. Yet, it’s hard to get people to really listen to us. I’m the president of The Children’s Heart Foundation (PA) and have fundraised for CHD research for years, I’ve had meetings with congressman, I’ve spoken at schools with my book, yet after posting your video, I had someone comment, “Thank you for sharing his story, some of us don’t understand the cause but this personal story helps.” I’ve been sharing my story and countless friends’ stories for years, but it was your story that caught people’s attention. So thank you for telling all of our stories that night!
You are now part of a community. You are not alone. For all of Billy’s procedures and obstacles he may face, we will be there. When your story fades from your fans’ memories, it will be front and center in our minds. We will pray for Billy, and it will be fierce prayers. When you have a worry in the middle of the night that seems silly, we won’t think it’s silly. When your worry seems outlandish, we won’t think it’s crazy, because we have had that worry too.
We all stood with you on the stage that night and we’ll stand with you through the rest of Billy’s journey. Because that’s what we do in this community, because the CHD battle is for life.
Best wishes to you, Billy, and your family,
Lori M. Jones, heart mom to Riley and President of The Children’s Heart Foundation (PA)